About Down syndrome from a family’s perspective

Whether you’re new to a Down syndrome diagnosis through pre-natal testing, or you found out when your child was born, you’ve probably been googling all kinds of things and maybe are feeling a little overwhelmed.

At Down Syndrome Connections we’re here to help you by using this blog to answer questions you might have - not from a medical or clinical perspective, but more from personal experiences.

Do people with Down syndrome face challenges? How will my family change? How do you handle worry, and the future, when your child has Down syndrome?

People with Down syndrome are more likely to face some challenges, but probably not ALL of the possible challenges that your medical team is going to list. That list can seem so overwhelming, so ask some questions about how likely each condition listed is. People with Down syndrome can do a lot! Scroll through some hashtags on your favorite social media platform like #theluckyfew, #downrightperfect and #nothingdownaboutit. All those hashtags show you real families whose lives have been enriched by their family members with Down syndrome.

Every family with a new baby experiences growth and change, whether their child has DS or not. Your family and extended family will go through a lot of uncertainty at the beginning of your child’s diagnosis. No one can tell you at birth what your child will be like. You’ll learn more about their personality and their strengths as they grow, and you will start to see a clearer picture not of what your baby will be, but who they are: class clown, tender soul, silly performer, smart, diligent, and most of all beloved. The most common thing we hear from families that they wish they could go back and tell themselves - at that moment of diagnosis - to focus more on their newborn baby as a person and a baby, instead of focusing on a genetic condition.

One last thing: You do not have to solve everything all at once when you get a diagnosis of Trisomy 21. None of us can possibly cope with all the possibilities all at once, and you will learn as you go with the help of your medical team and others who have similar experience with their child.